Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Wednesday, December 31, 2008

After yesterday’s post, my dear friend J wrote a note suggesting in the nicest, most loving possible way an additional explanation for why I’ve been tearing up so much lately. I attributed it to the hormonal changes catalyzed by the surgery… which is surely a big element in what is going on. However, J is also right, that I need to face up to the grieving part of all of this. Here’s what her note said, in part:

I've read your last few blog entries, and have thought: "should I call?"..."should I comment?" but have each time concluded that I should wait til you "found" the missing piece of the puzzle yourself. Until now.

So, have you thought of this? During this "down time," when you have fewer demands on your time, you may be grieving the many losses and changes you've experienced this year and in the past, and those you anticipate in the future. You've mentioned some: your surgery and recovery, acceptance of your new "self" (even if, in time, your energy returns and you have no residual symptoms), father's death .. (and memories of your mother's death), …, and the pending departure of AS for college. These are each really, really big issues. And there are probably more that I'm not aware of or have forgotten.

After what you've been through, grieving is a normal, fully appropriate thing to do...even if it means tearing up during episodes of West Wing (which by the way I abandoned early in the first season, when I became thoroughly annoyed by the tracking shots...actors walking toward the camera, doors opening and closing, talking and being so so clever.)

My guess is that you have been pushing back on the grief for a while, keeping busy, focusing elsewhere, trying to remember how lucky you are and that the situation could be much worse...but it's finally here. I may be wrong, of course. I have been once or twice before....

Bingo. I should have seen this sooner, and that I didn’t is evidence of those powerful coping and denial skills that have contributed to me getting this far. And now it’s time to deal with this as well. I’ve said a lot of times here that the support and caring from this community of friends has been sustaining. Here it is again. My experience in life has been that the first step to change, to dealing with something, to being who I want to be, is always to see the problem clearly and own up to the part of it that I own. And in this, J couldn’t have been more on the mark. I don’t much like grieving (does anybody?) and I also know through experience, that it doesn’t get any better to try to ignore it or pretend it is not happening.

On top of the loving wisdom of the note, Michael felt vindicated because he agrees completely with J about the tracking shots, which he also finds distracting and annoying. They don’t bother me. Right now, I’m marinating in West Wing during my downtime and enjoying the so, so clever dialogue. After reading J’s note, interestingly, none of what I watched last night made me tear up.

Tuesday, December 30, 2008

Having something to fight, as opposed to something simply to endure, is much more my style. While this adventure was in its acute stages, there was a lot to fight. Now, though, as I’ve written before, as this recovery proceeds at its own pace, it feels more like something to endure. For the first time, as well, I’m beginning to be worried that the current level of capacity—significantly diminished from what I think of as the baseline—is likely to be permanent. Michael disagrees, and argues that what’s going on now is all an artifact of reduced stamina. It would be nice if he’s right. For a lot of reasons, including that while still coming to terms with the fact that this is simply going to take a while, in retrospect it’s pretty clear that one of my responses was to try to pick fights with him. He’s good natured and nice enough that most of my efforts were futile. He can almost always make me laugh—and he laughs at a lot of stuff that a lesser person would take up as bait. When he wasn’t laughing, his general response was to ask if I was especially tired or something and not take it personally. Shea is also a lot like this and I wish I could learn to be more like them!

Shea has gone off to visit friends from camp and is having a grand time. We miss her a lot around the house. It does make for a really quiet down-time between the semesters, though, and I’ve managed to inch ahead some projects. There’s more to do and still more quiet time ahead so I’m hopeful that even in this reduced state, with minimal hours of true thinking clarity every day, the break will end with some serious accomplishments.

In the quiet, one of the things we’ve been doing is following up on John’s recommendation of West Wing. He’d talked it before, and it came up again as we were discussing Barack Obama’s choice to use the Lincoln inaugural bible. (How cool is that, anyway?) We’ve hugely enjoyed watching this, practically doubling our exposure to popular culture and TV series in the process. We’re feeling very hip and plugged in. So we came to it years later than the rest of the world, we’re here now…. Among everything else to like about this series (the writing, especially) is how the characters are consistently shown disagreeing with each other with tremendous overall civility, even when they’re passionate about the topic and their differences. They apologize for transgressions and continue positive working relationships. The general level of self-restraint modeled during disagreements is terrific. It would have been easy to go for drama by making this workplace a scheming nasty one, and instead, the show consistently depicts a large group of people working hard and focused on larger issues and principles and finds its drama in other places. Admirable. More workplace role models like this would go a long way in this world.

Meanwhile, one side-effect of this whole medical adventure—and the hormonal disruptions it has apparently triggered—is that I cry more than ever before in my entire life. At least this isn’t full-out weeping, more like tearing up. I cry reading the newspaper, or watching West Wing or hearing a story on the radio. It’s bizarre and I don’t care much for it. It feels like permanent PMS, except of course that’s it’s accompanied by hot flashes. That’s really fun. Presumably, this too will pass. Sooner would be better than later. The surgeon’s response, when queried, is that this is not unheard of, though not one of the most common responses. His speculation was that maybe it was the general stress and strain of brain surgery and predicts it will die down over time, like the other lingering symptoms.

On that front, I’m still puzzled by why the different parts of the incision heal so differently. For most of the length of the thing, you’d be hard pressed to find its location either visually or by feel. (You can easily feel the dip in my skill where the initial drill hole was made, though.) There are stretches of maybe cumulatively two inches, that are still raised, a bit inflamed and lagging way behind the other parts in the healing process. We keep putting vitamin E oil on them, and they do keep improving, bit by bit. The area of the scalp that’s tender continues to shrink, though it’s also still noticeable.

Kate commented the other day on the interconnection of symptoms: tiredness begetting less sharpness, making it take longer to figure it out when I’ve overdone. Check. Likely, all the glooms I’m experiencing now are also interrelated, on top of the regular seasonal stuff I always experience, plus the effects of less sunshine. Trying to joggle myself loose, I went and worked out a bit and tackled a task I’ve been dreading. I feel better from both: the exercise got my blood moving a bit and having the odious task completely finished feels great. Predictably, the job didn’t take all that long: I probably spent more time thinking about how much I didn’t want to do it than it took to tackle and complete it.

We’re enjoying tremendously the annual letters we’re receiving this year. We’ve both been struck (astonished and gratified) by the number of people who commented on reading this blog regularly. The increased connections with and to all of you has been the silver lining to this experience in every sense. Thanks for being out there, grand people.

The sun is shining here and it’s a beautiful day. We hope it is where you are, too.

Saturday, December 27, 2008

Slowly, it is becoming clear that my thinking habits of a lifetime are shifting. There is no way of telling whether this is temporary or permanent, but the effects are real enough.

One of my skills has always been to synthesize and organize lots of information and then to communicate it clearly. Through my adult work life, my most productive thinking times of day—the most creative, most useful and most likely to achieve something like flow—have been at the end of the day, from about 4-7 p.m. That’s when, after a day full of interaction, stimulation and events, I could pull everything together, make notes , write things up, organize for the next day, and generate the largest quantities of the most useful work. My best teaching has always been late afternoon, and my classes are all scheduled around knowing that I am sharpest at that time of day.

Now, though, I’m finding that my most productive times are early in the morning. This is disconcerting, because I’ve never been a morning person. I’ve always been slow to wake up and slow to click into gear after up and moving. I’d often find myself coming out of a fog mid-morning without much conscious awareness of what came before. I once took a five-day-a-week 8 a.m. law class in summer school where the professor started each class with a corny joke. Studying for the final, I discovered that all summer, in some form of note-taking auto-pilot in my morning fog, I’d recorded pretty much everything that was said through every class—including the corny joke every morning. It did at least lace the studying for the final with some groaning levity.

Nothing about any part of my self-image or habits is geared to being a morning thinker. That, however, is the least of the challenges this seismic shift presents. The most pressing issue is that, at least for now, morning seems to be the only time that I am getting any real thinking done all day. I’m hopeful that will change as this recovery continues, but I’m coming to realize that I’d better prepare for the eventuality that it might not be. This means rethinking deeply ingrained habits, some of them so set that I was not even fully aware of them. For example, it means rethinking how I schedule all my therapy appointments, as I’ve reflexively put those in the morning foggy times, which means that, at least as scheduled, they disrupt the only thinking time I’m allotted each day. Tasks that I’ve always just tackled in the morning, things that need to get done but don’t take deep thought, just habit, I turn to in the morning, and again, they are consuming what is now a limited and valuable resource. Becoming aware of and then changing these habits is taking more work than I’d anticipated. I am learning interesting things about myself in the process, though I cannot say they are things I’d ever aspired to learn. I’m trying to make the best of it and find something valuable in the process.

On another front, I’m also slowly awakening to the fact that all the rhapsodizing I did about my newfound trust in my body is just so much hooey. As I experience new aches and pains, I’m dismissing them just as easily and quickly as I rationalized, explained and ignored symptoms that were, in retrospect, tumor effects. I’ve already had a brain tumor, however unlikely that might be, and all this new stuff isn’t that, so my thinking goes. Thus, whatever comes along now is likely to be just the creakiness of aging, or my hypochondria, etc. Sigh. Thinking habits of a lifetime are hard to overcome! Somewhere along the way, I read that it takes between six weeks and six months of practice for adults to acquire and then ingrain new habits. Of course, noticing the old ones and deciding to tackle them is the first step, so I take some small consolation that at least, maybe, I’m on the path to real change. I haven’t found a way to get excited about that yet.

Friday, December 26, 2008

It started innocently enough. Everyone in the house was asleep, it was quiet, I was awake and it seemed to be the perfect time to clean off my desk ,recycle all the extra paper from the completed semester and generally reorganize. One thing led to another and, before you know it, there was quite a to-do list going from items uncovered in the tidying process and stimulated by thinking about next steps. It felt good to be getting things done, so on I worked.

Plus, did you notice, it was also Christmas-time? While I have gotten a lot better over the years, and really work on letting go of the complex laws (these are far stronger than mere rules) in my head about how Christmas “should” be and things I “must” do to make it that way, getting the balance right is an ongoing struggle. That my mother died shortly after Christmas when I was 12 increases the complexities of the season for me. After many (seven? eight?) hours of really satisfying work, it was time to turn to Christmas baking, table setting, last-minute arrangements, etc. Those went well, too. As an added bonus, we even found the missing presents purchased this summer.

The upshot, though, of this productivity is that I overdid it yet again. Back came the headaches, out went the balance, the arm started giving out, the whole shebang. The worst part is what these regressions do for my cognitive functions. Usually, the idea for a first line of a post here or the title, or the theme, come to me as I’m falling asleep. When I’m functioning well, those ideas are still with me in the morning. (In fact, they usually improve and get extended over night, coming and going from my dreams and in waking moments.) After I’ve pushed past reasonable limits, though, my short-term memory collapses and I have trouble making mental connections. I hate that the most of all the other effects. To my further chagrin, it took me most of a day to figure out what was going on. It’s not like I haven’t been claiming to be learning this exact, very same lesson now for weeks. If not months. In retrospect, I can pick out the warning signals I should have caught in real time. My hope is that this unpleasant reminder will serve a positive purpose in the future.

The good news is that accepting the reality and retreating to bed with good meds seem to be righting the ship again. The frustration with myself, and the residual embarrassment, linger.

On the other hand, we had a grand and low-key holiday with some unexpected grace points. Our traditional Christmas Eve dinner was disrupted by weather that kept our usual crew from gathering, so we put out an invitation to stranded law students. The resulting evening was a pleasure, with a student who had been trying to fly to Seattle since Monday taking us up on the offer. We’re hoping his rescheduled flights yesterday finally got him home. Michael made a great dinner—trying a new way to make the meat that was a huge success—and we all played Banangrams after dessert. It was a great evening and Michael, Shea and I all had a nice day together yesterday. Shea got a puzzle for Christmas that we started, and unlike my summer experiences, I can work puzzles again!

Monday, December 22, 2008

We had a wonderful weekend celebrating an early Christmas with Kearney and Brad, and are now settled in for a very quiet Christmas at home. While the news seems focused on pointing out how perilous are our times, we see a world inhabited by endlessly kind and nice people. We are happy and hopeful.

Of course, as I was telling a friend on the telephone the other day that I was working on an ethics presentation, his instant response was “You’re from Illinois: you’re not allowed to talk about ethics!” Little did he know that I am inured to this, as one of the observations I make repeatedly in my standard ethics talk is that I’m from Illinois, a state in which the standard form for some grants from the state requires affirmative certification that no state officials have been bribed in the application process. Even so, even with this governor and the complete standstill in state government, even with all the cynicism and rank stupidity the news brings every day, we observe the basic goodness of those around us, and we give thanks.

The local paper ran a story on my medical adventure yesterday, which brought an interesting deluge of email. One of the cohort of kids who were “tracked” in school with me from kindergarten on wrote because his mother had sent him a link to the story, for example. Virtually all of the mail had some positive and interesting message.

This morning, the incision has taken another leap in its improvement, with two of what had been four remaining inflamed spots seeming to have moved along in the healing process. It’s always a great start to a day when we have one of these leaps forward with the incision site. Some of the email in response to the article brought stories of others who have had similar experiences—or much worse. That all brought to mind the thought that’s been clattering around for some time about the relative differences of the acute and chronic stages of adventures like this. The acute phase is in many ways easier to handle, because there’s so much going on, and it’s so new and there just aren’t choices about what to do. The immediate requirement, however messy, is always pressing for the next step. The chronic phase, where you settle in for the long haul, and where the everydayness must be accommodated, is harder. Not only because it’s less dramatic and pressing, but because by the time it’s become a chronic condition, it’s boring to live, boring to talk about and boring for all those who care, no matter how deeply. I suppose it’s related to compassion fatigue or information overload: it’s just hard to sustain after something is months along. This all makes me think that it’s time to go out and investigate a bit what kind of organizations are providing support for those coping with chronic conditions and see what kinds of needs they might have to which we could contribute.

Now that the semester break is officially here, and now that we’re home and hunkered down for the duration, it’s time to think about Christmas cards, cookies, baking, and a puzzle to do with Shea. Our game for this season, we think, is Bananagrams, a fun crossword game, with “hands” that go quickly. Check it out if you like word games. Best wishes to all for a peaceful and happy week.

Saturday, December 20, 2008

We seem to be sliding from Part Five into Part Six: up until recently, there was not much choice about what to do. Most days were spent either asleep or doing recovery-related activities like the six appointments a week for various forms of therapy. As I continue to get stronger, more choices have opened up. It all brings to mind the (vastly more complex) theory in Barry Schwartz’s Paradox of Choice, essentially that having too many choices is exhausting and eventually depletes psychological well-being.

Clearly, my situation is a far cry from that. At the same time, there is something about the more restricted set of choices of Parts Two through Four that were easier. A tremendous amount of time now seems to be spent trying to predict how much energy I’ll have, balancing as I go along, and otherwise focusing on picking and choosing activities. From the beginning, we’ve been told that it would take between a year and two years to recover fully from brain surgery. This time frame has been consistently reinforced by the comments of those we know (or are directed to) who have had experiences like this one. The reality of restricted energy is boring. There are days when it makes me cranky, which immediately makes me feel like a total ingrate, because of how profoundly lucky we have been, from the first instant to now. Even keeping a balanced perspective takes energy!

Other than the ongoing shoulder and balance issues, the primary remaining effect from the surgery is the state of the incision scar. I continue to appreciate my buckwheat pillow (thank you, pillow concierge), as while much of the scar has completely disappeared, there remain three or four mildly inflamed areas that are quite sore. The surgeon told us at the recent check-up he thinks the incision looks good and about as expected. The inflamed bits seem to be standard for this state of recovery. The sensitive area of my scalp is vastly smaller than it was previously, but there is still a region that’s not right. The ability to punch a dent in the buckwheat pillow so those tender areas never touch is grand.

Finishing the marathon semester required serious exertion, so in among the week’s tasks of mopping up loose ends and excavating my desk, sleeping was my other major activity. More rest and a very low-key, loving Christmas are now the main agenda. It would be really nice if we could remember where we put the missing Christmas presents: items I bought on vacation and put “in a really safe place” are completely AWOL. It’s hard to tell what combination this might be of senioritis, overload, or not being sufficiently organized to note where we stored things. Alternatively, we had some basement organization work underway at one point, and it’s also possible that we simply outsmarted ourselves by starting a new organization system that was interrupted by the deluge of the medical adventure that followed. Whatever the cause, it’s deeply aggravating that we have very cool gifts we cannot find. We wake up in the night and exchange ideas, none of which have yet been fruitful. We’ll keep at it, and eventually, they’ll surface. Sooner would be better than later, but at this point, just finding the darn stuff would be gratifying.

Happy weekend. May it be as peaceful for you as we are planning for ours to be.

Tuesday, December 16, 2008

Done! Grades turned in, last talk given. Good-bye, Fall Semester 2008—and not a second too soon. It’s been a memorable semester and seeing the back of it is a good feeling.

Predominant among the good feelings is a strong strand of gratitude: it wouldn’t have happened without so much support and help from so many. Thank you all. There are lots of loose ends, of course, and they’ll take some time and energy, but nothing like what it took to get to this moment. I’m looking forward to a quiet semester break, resting, tidying up and concentrating on the book project. It would be grand to be able to pull two chapters together over this break, though I don’t know if that’s a realistic goal. In part, that turns on how many of the bits and pieces I’ve accumulated are usable and how many of them fit together. Most of all, though, I just want to stop for a while and consolidate the progress achieved so far in this recovery. Shea and I always do a big puzzle over the break and some quiet family time will be a wonderful thing.

Going forward, it has becoming clearer just how careful I’m going to have to be for some time. My stamina is strong at home, with great productivity. Going out in the world, though, consumes energy in ways that are not always obvious. Sticking to slow hare-dom as the steady state doesn’t come naturally, and I haven’t really figured out how to manage it properly or even to really understand it. Some days, I wildly overdo with a schedule that, on paper, looks realistic, and other days, I undershoot. Even in hindsight, it’s not always easy to tell the two apart or figure out the factors that make the difference.

Some advice shared by C after a major medical event in her life is relevant here: she warned about what it’s like to lose several months of your life. While tremendous assistance from a lot of people kept my classes going this semester, most of the other areas of my life experienced three months of almost total shutdown. Picking up their strands, trying to remember where things stood, assess what’s required next, etc., sometimes in and of itself takes tremendous quantities of energy. Somehow, I have to figure out how to hold that thought and factor it into my goals.

One thing that will help is that the course of physical therapy will be ending tomorrow, and thus will cut down on the number of standing appointments every week. So far, it looks like we will not need to seek new insurance approval for a continuation, as the original goals have largely been achieved. Much of what comes next in terms of continuing work on balance will shift into my strength training regimen. It’s not so clear how much longer occupational therapy will last: we seem to have hit a plateau and just need to keep plodding away.

When I was growing up, looking for patterns in behavior was a mainstay of family life, though I’m not now sure who brought that to the table. It was usually a bad thing to have a pattern of conduct described, as they usually turned into pejorative labels: Tina has a tendency to x, y or z. Carol likes crises. That kind of thing. Generally, I try to resist the habit, but all the same, it was a little startling to realize that recent decade turns in my life have involved major medical events: my gallbladder came out at forty and a brain tumor at fifty. Two events do not make a pattern, though, so I’m not going to fret about what sixty may bring. At least for now.

To celebrate the end of the semester, I slept in this morning. That felt great. I’ve done my morning exercises, read the papers and answered student emails about grades. On to the next thing. Slowly, deliberately, and with as much grace as I can muster. Happy Tuesday to all.

Saturday, December 13, 2008

Slowly, the realization is dawning that my self-image of past years contains a number of elements that were tumor-related, not intrinsic parts of my personhood. For example, “Tina is clumsy” is likely more of a tumor effect than a foundation truth. I’ve never been the world’s most coordinated, graceful person. This is constantly emphasized because I live with some on that side of the line, and there’s a big difference between their natural abilities and mine, but I’m also not the total klutz those years suggested. Many of the vexing, unexplainable, intermittent physical problems of that time—sore shoulders, headaches, odd fatigue, inability to do some exercises that involved moving my head in certain ways because it was painful—were not my imagination, wimphood or some form of weird hypochondria. In fact, not to be too self-congratulatory, in retrospect, I’d have to award myself at least a passing grade for dealing with what came along with moderate grace.

This all means (again) that I should be less hard on myself, more trusting of signals my body sends and generally more accepting. In some ways, this produces a vertigo of perception about the past few years. I’m still not sure how I feel about it.

Otherwise, the end of the fall semester is in sight: I successfully finished my final talk of the year yesterday. I was worried about it to the point that I had anxiety dreams the night before: missed getting off at the correct train stop, so I was late for the talk; couldn’t find any formal presentation clothes, so had to go in blue jeans; wrote a talk on the wrong topic…. you name it. Once there, though, it all went well. The group meetings were substantive and interesting and the talk worked well with an engaged audience. Whew.

For family Friday Movie Night, we watched several episodes of Forty Something, a Hugh Laurie production. (He starred and directed.) There were multiple places we were all laughing out loud, which was just the ticket last night. Shea loves British comedy, and Fry and Laurie particularly, so we’re watching our way through their work over time. If you like anything in the genre, this is worth watching. There are only six episodes, as it’s evidently an adaptation of a book; later, we’ll track that down as well. Am I the only one who thinks their names are completely backwards? I think the round-faced guy should be Hugh and the skinny one should be Stephen. Shea is mystified by this conviction of mine, but it persists over time.

There are only have five more papers to read and score, plus mopping up loose ends and calculating final grades for the final class. With any luck, I’ll get that done today and tomorrow will bring baking Christmas cookies with Shea. I’m really, really ready for that!

Turning to thinking about the holidays, Kearney and Brad are out of vacation time for traveling this year (due to time with us on vacation, time here for my surgery, and time here when my dad died), so we’ll try to go see them at least for a weekend. Michael and Shea will go cut down a tree today, continuing the tradition the girls established with Ernie so many years ago. We have stuck with the last tree farm Ernie selected, even though we know that he often switched from year to year, based on his scouting over the summer and his judgments each year about the “superior” trees each year. He reverted to this farm often enough that we feel it would have his approval. They will call Kearney when they select the tree so she can be involved, even from her distance. Shea is a big believer in the school of “more is more,” so while I’m ready for slightly smaller trees than we’ve had in the past, I expect that this year will again bring us a behemoth. At least now that she’s older, more the physical labor of dealing with the massive trees is hers, so she’s more involved in the cost-benefit analysis of “even bigger!”

More as soon as the semester is truly over. The finish line is in sight. It’s a good feeling.

Wednesday, December 10, 2008

Today marks three months from brain surgery. Put in that light, my condition and progress have been simply amazing. Looking at the tumor scans again this morning highlights how very, very lucky I have been, not only in the physical sense, but also in the loving community surrounding us. That thing was enormous. It’s still a bit hard to grasp that it was occupying part of my brain. Jill’s observation, early on, that my brain might have betrayed me, but not my mind, was a hugely important perspective and provided balance through the whole adventure.

At three months out, a quick summary is that I’ve hit a bit of a plateau in recovery, though the plateau is at a very high altitude. Most of what follows has been said here before. That’s the good news, if you can take it that way. We are.

I am almost fully functional, say 85-90% of “normal,” whatever that is. I’m still doing OT and PT each twice a week, though probably (we hope) nearing the end of each. My stamina is intermittent and lower than where I’d like to be. At home, I can work all day without flagging; out in the world, it is unpredictable as to when the energy will just end. This can be frustrating, but can also be managed with some thought. When tired, both my balance and full use of my right arm are compromised. I’m building back up on cardio exercise, trying to add 30 seconds or a minute every day on the treadmill. The incision and scalp are healing. The area of the scalp that remains "boggy" and just plain strange is much smaller than it was, down to the the size of my palm. Headaches are intermittent and low-enough level that it’s rare that some kind of analgesic (or narcotic) are necessary: most of the time, I’m still drug free. (And still laughing about the lunch encounter.) All in all, things are good. Even great. If I never improve from where I am now, there is a good life to be lived in this state. And, as before, more improvement is both possible and expected.

As to conclusions about this process, I’d say that patience is an acquired virtue, and it still seems overrated to me. On the other hand, it’s hard to overstate the importance of a good sense of humor and the ability to laugh at myself. And nothing can even come close to the value of loving friends.

We are so thankful for:

• Paul Lauterbur’s research making the MRI technology possible for the diagnosis and aiding the precision surgery• a benign tumor, in an accessible place, not entangled with my brain, and that was completely removed• Bill Olivero’s surgical skill making that possible, as well as his tremendous humanity through this process• great care by Carle nurses and other medical folks• hardy pioneer ancestors and a strong constitution• Mettler therapists and trainers: OT, PT, strength training, all supporting this recovery• flexible work that permitted me to do much of it from home in between naps• Amy Gajda and Laura Clower, incredible friends and colleagues who helped get my classes through the semester by stepping in to cover the missed classes and supporting my graduated return to teaching• wonderful students, whose grace, charm, kindness and good will made all difficult things possible this semester• hugely understanding collaborators who accommodated my absence and were understanding and helpful throughout• funny movies, podcasts and other occasions for laughter• cards, notes, songs, caring and support provided by you and our community, constantly encouraging me and us through the troughs of this and celebrating the progress, cheering it on

Most of all, that we all have each other. Everything about this process has reinforced the fundamental truth of the fact that the deeply meaningful parts of life are provided by our human connections. Thanks again for being out there.

Back to the final segment of grading. This is the last lap of a semester that has many characteristics of a marathon. It’s had pain, exhilaration, blisters, high moments and low. The finish line is a most welcome sight.

Sunday, December 7, 2008

Twice in the last two days, I have tripped and fallen flat on my face. Michael called this “planting my face,” which was a new one for me. It was certainly an accurate description of my two events, as each involved landing flat out with my face on the sidewalk (first time) or floor (second time). Ouch. Our operating theory is that this has been a combination of bad luck and me being tired and a little sick. Other possible explanations wouldn’t be so nice, so we’re working on that one while staying watchful. It is true that, both days, the out-and-about portions of my day slightly exceeded available energy, so renewing the focus on the slow hare model seems sensible. And I’m still way behind on answering my email, including a really thoughtful response to the recommendation of Mistakes Were Made (but not by me) from the left coast. My adventures have left me with one badly bruised knee, sore joints, a pulled muscle in my chest and a very sore right shoulder. Happily, we have newly gained knowledge of a whole series of exercises for the shoulder, so they are keeping it exercised and loose.

Something about doing the shoulder exercises stimulated a lost memory of a trip to the emergency room, probably five years ago, when a sharp pain in my shoulder during the day caused the dial-a-nurse line to worry about a heart attack. It wasn't, and the pain eventually went away on its own, but in retrospect, we got to wondering if this might have been tumor-related? The surgeon told us in an early visit that the part of my brain being most pressured by the tumor was that which controls the right shoulder and arm. Could that have been another early symptom that we explained away, lacking any linking evidence?

Thanks for the movie recommendations! We went with the John Adams mini-series, which we’re enjoying, though the greater context provided by my recent reading of the book has also helped us a lot. Seeing the dramatization of the live smallpox inoculation was stunning and sent us running to the book, for its longer explanation of the process, as well as to Dr. Google. We also visit Dr. Google to find out about the historical accuracy of pierced earrings in the revolutionary period, as it looked so modern to us. Live and learn: Shea says that piercing was common for hundreds of years, giving sway to screw-back earrings only in the 1920s. Curious how these things go: it required months of lobbying to get my mother to permit me to get pierced ears, because in her day, nice girls didn’t have either pierced ears or wear ankle bracelets. Ankle bracelets never appealed, but pierced earrings were the hallmark of fashion when I was in seventh grade.

In the interests of balancing energy, activities this week are being rationed and regrets sent to several that would otherwise have been nice to be able to do. Friday brings a half-day-plus of ethics presentations at the VA in Danville, so the beginning of the week needs to be lower-key, ruling out a meeting in Chicago the day before that I’d hoped to be able to attend. Next time, it will take priority over something else in its week. If practice makes perfect, this balance thing will be a wonder to behold by the time I’m fully recovered. That will be interesting to see.

Our good wishes to all for a peaceful and restorative Sunday and a great week to come.

Friday, December 5, 2008

We saw the surgeon for a follow-up appointment yesterday, and he was very pleased with how the incision looks and with my progress generally. What was a little less wonderful was the news that I’m likely to keep having headaches for up to a year or more. Putting this in the best possible light, at least it means that I’m not being a total hypochondriac about recent headaches, which seemed to the “drug free” (see last post) me to be excessive this far out from surgery. It turns out, they’re to be expected. Oh well. The next check-up isn’t for another three months, and that one will probably involve another MRI. That will be about six months after surgery, which is when we’ll find out how much the brain tissue has refilled the tumor void, because by that point, that’s as refilled as it’s ever going to get. After that, I think we switch to once-a-year scans, to watch for recurrence of the tumor, as it is not uncommon for mengiomas to recur. Since mine was benign and was totally removed, that puts me in the very lowest risk category, however. At the same time, women who have menigiomas after 40 (me) have a higher incidence of breast cancer. I guess I’ll pull that reminder to get my mammogram out of the pile and get to it. When it arrived, it felt like too much medical stuff on top what was already going on, but this frames the choice a little differently.

For no particular reason that is apparent, I was awake in the night, so finally figured I might as well get up and work. The good news is, it was really productive time, all except for not being able to find a folder in which I’m keeping the successive drafts of one of my current writing projects. Without question, the folder must have gotten moved in the general cleanup that always precedes end-of-the-semester grading. (One class down, one to go!) I surely put it someplace on purpose. Despite extensive searching, though, it hasn’t resurfaced and I am mightily puzzled. Also, vexed. This is the kind of thing that happens these days that just drives me crazy, although the answer for what I did (and why) is likely to float back, just not soon enough. Soon enough in this respect would have been three hours ago.

After mentioning that I was reading John Adams, E suggested Trollope’s Pallister novels, so I’m now onto Phineas Finn. I don’t know how I missed these before and I’m enchanted.

Today brings seeing my 6th grade pal for lunch. J uses the term “protégé,” liking that better than the official term “mentee,” but I haven’t ever really warmed up to either term. I do like her, though, whatever word defines our relationship. More PT, more strength training, and a meeting or two. For me, that’s a full day of out in the world, to be balanced with working at home on the grading and the writing. Yesterday was much the same (OT instead of PT, though) except that the out-in-the-world part used a little more energy than I had—by the end, I was dragging. The surgeon pointed out that the best way to look at these things is on a week-to-week basis, not daily, as he reminded us that there are going to be good days and bad days. Yesterday wasn’t a bad day, it just wasn’t stellar. That’s still pretty good!

Have a great Friday. Does anyone have any movie recommendations to share for a good weekend watch with Shea?

Wednesday, December 3, 2008

Better is a great place to be, but it’s not the same—or as good as—all better. Phase Five of this adventure means that every single symptom/side-effect is better than it was, and most dramatically so. Most of the time, that’s enough. The rest of the time, this netherworld of “better, but not all the way” is awkward, particularly given how unpredictable it can be. One day, there will be energy and the next, not so much. Or, I’ll feel fine while starting off and wilt midway through an event. While all along, people warned that it would be a long recovery process, the every-dayness of it—and just how long this slog really is—are more challenging. It wasn’t nearly so apparent, somehow, when most of my time was spent at home. The task at hand is to achieve some balance and grace: not being too hard on myself when the energy isn’t there or when it feels like I’m wallowing. For some reason, the scar on my head feels like more of a disfigurement now than it did when it had staples in it. This is odd and puzzling, but it’s real enough. Regular old congestion headaches always trigger a question about whether it’s congestion or my brain shifting back into the tumor void, which seems borderline neurotic. Balance then reasserts itself, along with appreciation for how good things are now. There are just adjustments for how tiring the stimulation of being out and about can be—and how great it is that it is possible to be out and about.

There was a very funny moment last week when at lunch with a colleague, when we were discussing my tremendous progress, including getting off all the medications. In the conversation, at one point, he said “one week drug-free, that’s great!” just as our food was arriving. You should have seen the look I got from the waitress.

I’ve been reading David McCullough’s John Adams. In one of her letters, Abigail Adams refers to the difficulties the revolution was bringing to daily life, and she wonders if their descendants would ever fully be able to appreciate the sacrifices made to permit them (that would be us) to live in liberty. There’s a sense of perspective to stop you short, as nothing of what we experience is anywhere near the difficulties of their lives in ways large (the individual consequences of committing treason by signing the Declaration of Independence, for example) and daily (what the everydayness of life meant in a time when travel was by horseback in this country and by ship across the Atlantic and participating in national events meant being away from home for months if not years). With all our creature comforts—not to mention the ability to have brain surgery and get back to life within weeks and months—we are spoiled. It doesn’t take much looking back to highlight the full extent of how spoiled we are: our family letters include one from our civil-war-veteran homesteading ancestor, who used to write to his wife (“Dear Wife,” all the letters begin) and mail them on his periodic trips to town on his horse, a journey requiring most of a day each way. There’s one letter in particular that describes keeping an iron anvil at hand to kill the rats going after his grain. This would be through the winter on the South Dakota prairie, where he was living in a sod hut.

Looking for the precise words of the Abigail Adams letter, which I never did find, highlights another shortcoming of the Kindle: it’s very hard to locate a remembered passage, as you have to search for it (laboriously, given its dumb keyboard) by keywords, and if you don’t recall them precisely, the only choice is a hugely time-consuming process of stepping through, page by page. Finding things in a real book is ever so much faster, when you can page through and have visual cues on the page, or at least can skim to find the context and place. On the other hand, I truly love being able to alter the size of the font depending on how tired I am, and the portability of it all. An unexpected side effect, though, of reading on the Kindle, is that people in my house never know what I’m reading now. It used to be that they’d see the books lying around and ask about them, or just track progress and topics. It has only slowly emerged how much conversation used to be catalyzed that way and the necessity of saying now “I’m reading xyz and….” It’s interesting how small changes have larger ripple effects sometime.

Writing here regularly is one of the casualties of being out and about more; there’s only so much energy to go around, especially now as the end of the semester is upon us—and not one single second too soon. Here’s to ends of segments—the semester, the year, this adventure. Cheers to all.

Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.